My operation was done with a new technique called navigation-aided surgery, whereby a virtual-reality system is employed to support the operating procedure. Basically, MRI and CTI images were used as a guide to the inside of my brain. This enabled the neurosurgeons to precisely navigate and to use minimally invasive techniques to remove the tumour.
Now this was something they didn’t tell me beforehand, but in order to align my head with the navigation system, I was screwed (literally!) into a head vice. Three holes were drilled into either side of my head just above the ears to fix the instrument. No movement possible anymore – think mediaeval torture device!
They also did a couple of other unspeakable things to me, including sticking tubes into just about every orifice in my body. Then a seventh, rather smallish hole was drilled into the back of my head through which the tumour was cut up and extracted piece by piece. The whole operation took about six hours including preparation.
I plan to read up more on this new procedure, as I find the combination of the surgeons’ craftsmanship, the computer technology and the micro technology used for the surgical tools absolutely mind-boggling.
On another front, I will meet the radio-oncologists for the first time next week in order to discuss a course of action. I have also received an incredible amount of information and links from many of you, which I am going to research. Thanks for all your support!
One promising bit of information regarding glioblastomas comes from Duke University, according to this recent article in the “Economist”.
Hi Tom, ich weiß nicht, ob Du meine mail(s) bekommen hast und wollte daher nochmal auf einen interessanten link bezüglich der dendritischen Zellen verweisen und zwar http://www.koelner-modell.de – die dort unter Tumorimpfung erwähnte Phase III-Studie aus Heidelberg ist jene, an der Patienten von uns mit Hirntumoren sehr vielversprechend teilnehmen, Voraussetzung ist allerdings, daß die Neurochirurgen Tumormaterial asserviert haben. Ganz viele liebe Grüße, Anja
Hi Tom,
I was thrilled to hear that the “blob is gone”, but sobered by the diagnosis. It seems that you are in good hands though, and I have faith that your medical team can do wonders to clean up after your successful surgery. I did a bit of searching online, especially on the US National Cancer Institute website (www.cancer.gov). I expect you’ve already looked over this site, but they have a listing of a whole array of clinical trials for glioblastoma, including many in Europe, which are listed at: http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=4704432
They also have an online chat service that might be useful at: https://cissecure.nci.nih.gov/livehelp/welcome.asp
and a publications locator at: https://cissecure.nci.nih.gov/ncipubs/
I’m not an expert on glioblastoma multiforme, but this is a tumor that arises from an astrocyte. Astrocytes are not neurons, but serve as support cells in the central nervous system. They tend to balance the growth factors in the brain and can even make up some of the barrier protecting the brain. We don’t have much expertise in neuro-oncology at Fox Chase, so not a lot of experts for me to talk to here, but I’ll keep searching for info in the coming weeks and months. Keep in mind that you were blessed to have this tumor develop in an accessible location, and the surgery was possible and highly successful. Others aren’t so lucky. In addition to being amazed at the sophistication of the surgery, I’m sure you’ll be amazed at the modern methods they use to focus radiation to specific tumor sites. Also, I’m sure its comforting to know that you’ve got quite a fan club rooting for you out here with over 1850 bloghits so far! The best medicine is clearly humor and a positive attitude, and I know you thrive in these, Tom, so keep up the good cheer, keep active, keep informed, ask a ton of questions, and set goals to beat the odds.
Cheers,
Kerry, Deb, Jake and Brad Campbell
Hi Tom,
I am interested in the Duke stuff – have you checked out the clinical trial: perhaps you can participate? I don’t think you have to be there to do it –
Avastin in Combination with Radiation and Temozolomide, followed by Avastin, Temozolomide and Irinotecan for Glioblastoma Multiformes and Gliosarcomas
There is a promising article which discusses treatment with avastin which is a drug used to treat other cancers.
There is a checklist of criteria and it is for newly diagnosed patients who have not yet undergone radiation (I think) — it’s at http://www.cancer.duke.edu —
check it out – Thinking of you —
Hi Tom,
Have been traveling, but still checking in on your Journey.
There are a lot of opinions and you have to sort them out. For what it is worth, the correlation between Glios and viruses is compelling (Anja above). Fact is that Glios have no known cause and that usually means “no obvious environmental cause” like some leukemias. So viruses can be the culprit.
I think it is important to look seriously in the direction of immune related therapies to compliment conventional therapy.
These treatment options are going to be available in clinical trial settings. I would recommend you get to know what is out there.
I am happy to assist you in reviewing options if I can.
In the end it’s just another part of this crazy journey. Sail on Tom.
Best wishes to you all.
Gruss
Brendan and the Aussie crew.
Things to do at Duke (if you do go) . . .
1. Stay at the Washington Duke Inn and have a drink on the terrace overlooking the golf course (after having chilled in the hot tub – er, roasted in the hot tub, chilled in the indoor pool…)
2. Look for Michael Jordan while having your drink (he plays golf there).
3. Look for all the other cute basketball players across the street at Duke (well – that one’s for the girls).
4. Visit the lemurs from Madagascar at the Primate Center – very cool. Fascinating creatures, actually. (Make appt. first – weeks ahead if possible – it’s a sort of clandestine place and they won’t let you on the premises without an appointment.)
5. Visit the Duke Chapel. Quite beautiful and peaceful.
6. Take Milena to the Hideaway (if you can find it) on the Duke Campus – after the girls are in bed.
7. Take a tour of the Duke Campus – beautiful!!! –
8. Visit the campus book shop and hang a left immediately upon entering for a free coffee (what the heck?)
9. Oh nearly forgot – best part – “hit the trail” for a walk (or jog?) – hilly, but great – it’s located between near the entrance of the Washington Duke)…
10. Blow those clinical trial research guys away by your interminable spirit and longevity!!!!
and last but not least….
11. Have another drink on the terrace at Washington Duke Inn! The view is amazing!!!!
This one’s for Milena.
Hi Milena, I miss you so much and wish we could be sitting in some cafe in fribourg shooting the shit over a coffee (or whatever), but i’m here and you’re there. Wish I could just give you a hug and tell you it was all a bad dream! I have been in awe of you – still with Dennis (Tom) after all these years and me? i’ve been through – well, let’s not go there. Anyway, your girls the same age as my boys, worlds apart, and we haven’t even met each other’s kids yet and they’re teenagers! – so much time has gone by but how crazy it is to know that it would take half a mili-second to reconnect with you and start chatting away. Remember when I used to call you guys and Carime or you would call me and we’d say, “what’s in your refrig? great – bring it!” and we’d have THE BEST impromptu dinners? I miss all that socialization!
I think it’s really good to stop and think about all we have to be thankful for and all that we’ve gotten to do in our lives (ok now i’m sounding really old!!!)
Anyway, take care of those beautiful, smart girls, and of course Dennis, and please remember you can’t help them without helping yourself first (analogy – you’re on a plane – oxygen for you first, then you’re able to help them…) and I hope that we can see each other again sometime! (was the last time in NY?????)
pls. excuse the run-on sentences, typos, swearing, etc.
Love
Kim
ps why are those little happy faces inserting themselves into my text? and they seem to know when to go in – kinda spooky if you ask me!
I must add on to Kim’s message…
Impromptu dinners… Living in Basel just below your flat was the best. Tom can make the simplest of dinners seem like a treat. A dinner to cherish with Tom toasting to having a day together. You all are the best neighbors we ever had! Too bad we all moved away…
I feel like Kim, in that we too have missed you all in the time that we have lived here in Philly. I am so glad to get to check in and see the humor, wit, & cheery thoughts to keep all hopes of medical science kicking in and doing something quick…
Of course if you come to the US for ANY treatment, I think those romantic dinners in Durham will have to be second to a party everyone on the east coast will throw (in meeting each other).
Keep up the good spirits, and I don’t mean the wine. Thank you so much for sharing.
Love,
Debbie & the Campbell Clan